Hopeful sunrise over a child receiving care for sickle cell anemia.

Sickle Cell Anemia in Congolese Children: Understanding Crises and Improving Care

Beau Callahan in Health & Wellness June 2025 • 4 min read.

"A deep dive into the acute complications of sickle cell anemia in Kinshasa and how to improve patient outcomes."

Sickle cell anemia (SCA) is a significant health challenge in the Democratic Republic of Congo (DRC), with an estimated 30,000 to 40,000 newborns affected each year. Despite the high prevalence, there's a critical gap in data regarding the acute clinical manifestations of SCA in Congolese children. This lack of information makes it difficult to develop and implement effective healthcare policies tailored to manage the disease properly.

A recent retrospective study conducted in the Department of Pediatrics at the University Hospital of Kinshasa aimed to address this gap. The study reviewed seven years of data on children admitted with acute sickle cell crises. By analyzing this data, researchers hoped to identify patterns and characteristics of SCA in this specific population, providing valuable insights for improving care strategies.

This analysis is particularly crucial because early diagnosis and appropriate management, including timely interventions like antibiotics and vaccinations, can significantly improve outcomes for children with SCA. Understanding the specific challenges and clinical presentations in a resource-limited setting like Kinshasa is essential for developing targeted and effective interventions.

What are the Key Findings About Sickle Cell Crises in Kinshasa?

Hopeful sunrise over a child receiving care for sickle cell anemia.

The study focused on 108 patients diagnosed with SCA, revealing several critical insights. The median age of the patients was 10.5 years, with a slight majority being girls (51%). One of the most concerning findings was that none of the children were diagnosed through neonatal screening, highlighting a significant gap in early detection efforts.

Further analysis revealed a considerable delay in diagnosis, with the median age at diagnosis being 90 months. Similarly, the median age for the first blood transfusion was 36 months. This delay in intervention can lead to increased complications and poorer outcomes for affected children.

Pain Episodes: Represented 38.2% of acute events.
Acute Anemic Crisis: Accounted for 34.3% of events.
Severe Infections: Contributed to 21.9% of events.
Neurological Issues: Altered sensorium and focal deficits were less common, at 3.4%.

Interestingly, while a significant number of patients (56.5%) were eligible for hydroxyurea treatment, only a small fraction (6.6%) received it. Hydroxyurea is a medication known to reduce the frequency of pain crises and other complications in SCA. The low utilization rate highlights potential barriers in access to this essential treatment.

What Does This Mean for Improving Sickle Cell Care in the DRC?

This study underscores the urgent need for improved early detection and comprehensive management strategies for sickle cell anemia in Kinshasa. Establishing neonatal screening programs is crucial for enabling timely diagnosis and intervention. Additionally, addressing barriers to accessing treatments like hydroxyurea and improving vaccination rates can significantly reduce morbidity and mortality among affected children.

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This article is based on research published under:

DOI-LINK: 10.4081/hr.2017.6952, Alternate LINK

Title: Acute Crises And Complications Of Sickle Cell Anemia Among Patients Attending A Pediatric Tertiary Unit In Kinshasa, Democratic Republic Of Congo

Subject: Hematology

Journal: Hematology Reports

Publisher: MDPI AG

Authors: Michel Ntetani Aloni, Bertin Tshimanga Kadima, Pépé Mfutu Ekulu, Aléine Nzazi Budiongo, René Makuala Ngiyulu, Jean Lambert Gini-Ehungu

Published: 2017-06-01

Everything You Need To Know

What are the most common acute complications experienced by children with Sickle Cell Anemia in Kinshasa?

The most frequent acute complications observed in children with Sickle Cell Anemia in Kinshasa include pain episodes, which constitute 38.2% of acute events, followed by acute anemic crisis at 34.3%, and severe infections, accounting for 21.9%. Neurological issues such as altered sensorium and focal deficits were less common, representing only 3.4% of the cases. Understanding the prevalence of these specific crises is vital for developing targeted treatment protocols and resource allocation strategies within healthcare facilities.

Why is early diagnosis of Sickle Cell Anemia so crucial for children in the Democratic Republic of Congo?

Early diagnosis of Sickle Cell Anemia is critical because it allows for the prompt initiation of interventions such as prophylactic antibiotics and vaccinations, which can significantly reduce morbidity and mortality. The study in Kinshasa revealed a median diagnosis age of 90 months, which is far too late. Implementing neonatal screening programs would facilitate earlier diagnosis, enabling timely management and potentially preventing severe complications and improving overall health outcomes for affected children. This also allows for early education of families on managing the condition.

What role does Hydroxyurea play in the treatment of Sickle Cell Anemia, and what challenges exist regarding its use in Kinshasa?

Hydroxyurea is a medication that can significantly reduce the frequency of pain crises and other complications associated with Sickle Cell Anemia. Despite its proven benefits, the study found that only 6.6% of eligible children in Kinshasa received Hydroxyurea. This low utilization rate suggests there are substantial barriers to accessing this essential treatment, which could include cost, availability, lack of awareness among healthcare providers and families, or logistical challenges in distribution. Addressing these barriers is essential to improve the quality of care for children with Sickle Cell Anemia.

What does the absence of neonatal screening for Sickle Cell Anemia in Kinshasa imply for the health outcomes of affected children?

The absence of neonatal screening in Kinshasa, as highlighted by the study where none of the children were diagnosed through such screening, has profound implications for the health outcomes of children with Sickle Cell Anemia. Without early screening, diagnosis is often delayed, as evidenced by the median diagnosis age of 90 months. This delay can lead to increased vulnerability to severe complications, including infections, organ damage, and a higher risk of mortality. Early detection through neonatal screening is a critical step in initiating timely interventions and improving the overall prognosis for affected children. Furthermore, it allows families to prepare and manage the condition proactively.

Beyond addressing acute crises, what comprehensive management strategies are needed to improve the long-term care of children with Sickle Cell Anemia in Kinshasa?

In addition to managing acute crises, improving long-term care for children with Sickle Cell Anemia in Kinshasa requires a multifaceted approach. This includes establishing neonatal screening programs for early diagnosis, ensuring access to essential treatments like Hydroxyurea, and improving vaccination rates to prevent infections. Furthermore, comprehensive care should involve regular monitoring for complications, nutritional support, pain management strategies, and psychosocial support for both the children and their families. Educating healthcare providers and the community about Sickle Cell Anemia is also essential to promote early detection, adherence to treatment, and overall improved quality of life for affected individuals. A holistic approach considering all these factors is necessary for effective long-term management.